Family Centered Neonatal Couplet Care:
Scientific Context & Implementation in Practice
”The Karolinska Way”
Neonatal Couplet Care Conference
Manchester, NH, USA April 28, 2011
Siri Lilliesköld, RN, Björn Westrup, MD Ph D
Karolinska University Hospital
Stockholm, Sweden
Neonatal Family Centred Couplet Care
Continuous improvement & research for neonatology
of the future
Changing the future for infants in intensive care
The ultimate objective of neonatology
Can developmental care help us to get there?
Kapellou
2006
Impact of rearing conditions during the
neonatal period on adult brain function
Prematurity associeted
with medical conditions in adulthood:
Hypertension
Edstedt Bonamy et al, Pediatric Research 2005
Johansson et al, Circulation 2005
adjusted OR
Diastolic BP ≥90 mm Hg
Systolic BP ≥140 mm Hg
2
Sympatoadrenal hyperactivity
Johansson et al, J Internal Medicine 2007
1
Smaller vascular bed (capillary density)
Edstedt Bonamy et al, J Internal Medicine 2007
Smaller aorta
Edstedt Bonamy et al, Pediatric Research 2005
Edstedt Bonamy et al, Acta Paediatrica 2008 (1)
Edstedt Bonamy et al, Acta Paediatrica 2008 (2)
Smaller kidneys (normal GFR)
Rakow et al, Pediatric Nephrology 2008
0
24-28
29-32
33-36
37-41
gestational weeks
42-43
Titus Schlinzig,
Mikael Norman et a.
Acta Pediatr 98:7,
2009
Synactive Model of Developmental Care
Systems perspective
H. Als
Survival – live-born infants (n = 707)
acc. to gestational age at birth JAMA 2009
26 wks
25 wks
24 wks
23 wks
22 wks
Parental benefit
– extension of days
Temporary parental benefit when the child is ill
60 + 60 days/ parent and year, can be extended if
there
is a life-threatening condition (~< 32+0 wks)
600
Children born from 1995 - 30 days can not be transferred to the other parent.
General
parental
benefit:
Children
born from
2002 - 60 days can not be transferred to the other parent.
480
500
450
360
400
270
300
210
200
180
100
0
1974
1978
1982
1986
1990
1994
1998
2002
2006
What is the scientific
support, the level of
evidence?
The Stockholm Neonatal Family
Centered Care Study:
effects on length of stay and infant morbidity
A Örtenstrand, B Westrup, E Berggren Broström, I Sarman,
S Åkerström, T Brune, L Lindberg, U Waldenström
Karolinska Institute, Stockholm Sweden
Pediatrics Jan. 2010;125: e278–e285
Intervention:
True (?) family centered care
– parents could stay 24 / 7 from admission to
discharge
parents had a separate room in the unit from the first
day.
The infants moved from the “acute” room into the family
rooms as soon as they reached a stable state.
Annica Örtenstrand
13
Infants randomized into the study
Randomized infants
n = 366
Allocated to family care: 183
Allocated to standard care: 183
(1 infant death)
with congenital disease: 2
with congenital disease: 5
Analyzed by
Intention-to-treat: 183
Without congenital disease: 181
Analyzed by
Intention-to-treat: 182
Without congenital disease: 177
Included infants
Family care
n = 183
Standard care
n = 182
24 – 29, n (%)
28 (15.3)
31 (17.0)
30 – 34, n (%)
102 (55.7)
103 (56.6)
35 – 36, n (%)
53 (29.0)
48 (26.4)
Pair of twins
21
24
Gestational age at birth
Annica Örtenstrand
15
Length of stay in hospital
Adjusted for: gestational age at birthA, non-Swedish-speaking backgroundA,B,
settingA,B
Family care
n = 183
Standard care
n = 182
27.4
32.8
-5.3 (p= .05)
24 – 29 w, mean
56.6
66.7
-10.1 (p= .02)
30 – 34 w, mean
19.2
23.6
-4.4 (p= .16)
35 – 36 w, mean
6.4
7.9
-1.4 (p= .39)
All infants A, mean
difference
days
By gestational age B
Annica Örtenstrand
16
Length of stay in intensive care (level II and level III)
Adjusted for: gestational age at birthA, non-Swedish-speaking backgroundA,B,
settingA,B
Family care
n = 183
Standard care
n = 182
13.3
18.0
-4.7 d
(p= .02)
24 – 29 w, mean
32.4
43.1
-10.6 d
(p= .04)
30 – 34 w, mean
6.0
8.5
-2.5 d
(p= .02)
35 – 36 w, mean
1.5
2.5
-1.0 d
(p= .24)
All infants A, mean
difference
days
By gestational age B
Annica Örtenstrand
17
Infant morbidity
Adjusted for: gestational age at birth, non-Swedish-speaking background, setting
Family care
n = 183
Standard care
n = 182
OR (95% CI)A
Verified Sepsis, %
7.1
9.8
0.68 (0.3-1.6)
Verified NEC, %
2.7
3.3
0.83 (0.2-2.8)
15.3
16.9
0.90 (0.4-1.9)
IVH grade II-III, %
3.3
3.8
0.95 (0.3-3.2)
ROP stage II-V, %
2.7
6.6
0.34 (0.1-1.1)
BPD moderate-severe, %
1.6
6.0
0.18 (0.04-0.8)
Diagnosed. PDA, %
Annica Örtenstrand
18
Ventilatory assistance and supplemental oxygen
Adjusted for: gestational age at birth, non-Swedish-speaking background, setting
Family care
n = 183
Standard care
n = 182
difference
Respiratory support
n (%)
90 (49)
109 (60)
OR: 0.65 (0.4-1.0)
Mecanical ventilation
days, mean
0.6
1.3
-0.7
CPAP,
days, mean
6.5
8.7
-2.2
Supplimental oxygen
days, mean
11.0
12.2
-1.3
All infants
Annica Örtenstrand
19
Family care might operate through the
common pathhways of pain and stress
Parents in Family care may have a greater
opportunity to co-regulate the caregiving with
the needs of the infant
time the care-giving
Parental presence/skin-to-skin may
contribute to better sleep organization
Conclusion
Family care in a level-II NICU, where parents could
stay 24 hours per day from admission to discharge
may reduce …
length of stay for preterm infants
bronchopulmonary dysplasia
Annica Örtenstrand
21
Recent trials on
post-discharge interventions
which focus primarily on sensitive and responsive parent-infant
interactions, infant development and self-regulation of infant primary
functions as autonomic stability, motor and state organization and
attention/interactive capacities – to organize the infant behavior in
order to gain control over its own body and world around him
The Norwegian / Tromsö RCT (Kaaresen et al Early Hum
Dev 2008 & Pediatrics 2010)
Modified Mother Infant Transaction Program
1&2 years: reduced parental stress
5 years: +½ SD in cognition
The Amstedam IBAIP RCT (Koldewijn K, J of Pediatr)
Infant Behavior Assessment Intervention Program (Rodd Hedlund)
2 years: improved motor (PDI) and for the infants with “double risk”
(low maternal education and BPD or abnormal cranial ultrasound
also improved mental development (MDI).
Results at corrected age of 3 years
Nordhov SM, Rønning JA, Dahl LB, Ulvund SE, Tunby J, Kaaresen PI.
Pediatrics. Early intervention improves cognitive outcomes for preterm infants: randomized controlled trial. 2010
Nov;126(5):e1088-94.
Intervention
Control
N=67
N=67
MDI mean (SD)
97.9 (11.1)
92.3 (15.6)
≥100 n (%)
30 (44)
23 (34)
85-99 n (%)
30 (44)
27 (40)
84-70 n (%)
6 (9)
12 (18)
<70 n (%)
1 (1.5)
5 (4)
N=66
N=66
PDI mean (SD)
93.7 (13.6)
92.8 (14.5)
≥100 n (%)
23 (35)
23 (35)
85-99 n (%)
34 (51)
31 (47)
84-70 n (%)
6 (9)
7 (11)
<70 n (%)
3 (5)
5 (7)
Crude Difference,
Mean
( 95% CI)
P
Adjusted
Difference,
Mean (95% CI)
P
5.7 (0.9 - 10.5)
.02
4.5 (-0.3 – 9.3)
.06
1.2 (-3.8 to 6.5)
.6
Results at corrected age of 5 years
Nordhov SM, Rønning JA, Dahl LB, Ulvund SE, Tunby J, Kaaresen PI.
Pediatrics. Early intervention improves cognitive outcomes for preterm infants: randomized
controlled trial. 2010 Nov;126(5):e1088-94.
Intervention
(N = 66)
Control
(N = 65)
Crude Difference,
Mean (95% CI)
P
Adjusted Difference,
Mean (95% CI)
P
Full scale IQ (SD)
< 70, n (%)
70 – 84, n (%)
85 – 99, n (%)
≥ 100, n (%)
102.3 (13.5)
1 (2)
2 (3)
29 (44)
34 (52)
95.6 (19.2)
6 (9)
11 (17)
17 (26)
31 (48)
7.2 (1.3 to 13.0)
.02
6.4 (0.6 to 12.2)
.03
Verbal IQ (SD)
102.4 (14.0)
96.3 (18.1)
6.2 (0.4 to 11.9)
0.04
5.5 (-0.3 to 11.3)
.06
Performance IQ
(SD)
101.3 (15.8)
95.3 (18.4)
6.9 (0.8 to 13.0)
0.03
6.3 (0.2 to 12.3)
.04
Behaviour and mortality at 5 years
Subtests of the NEPSY test battery: activity and distractibility
Acta Paediatrica 2004;93:12004;93:1-10
NIDCAP care
Conventional care
n=2
n=4
n=7
n=1
n=7
n=3
Behaviour at five year follow-up
normal
minor behavioural deficits
significant behavioural deficits
deceased
Pies show counts
n=5
n=3
Odds Ratio for surviving …
(95% CI)
with normal behavior
NIDCAP / Control
P-value
19.9 (1.1 – >100)
0.04
Exact logistic regression correcting for gender, gest age, relative birth-weight, education of parents
Disability and mortality at 5 years
Acta Paediatrica 2004;93:1-10
NIDCAP care
Conventional care
n=2
n=4
n=4
n=6
n=2
n=3
Outcome at five year follow-up
Normal
Impaired without disability
Moderately disabled
Severely disabled
Deceased
Pies show counts
n=1
n=1
n=4
Odds Ratio for surviving …
(95% CI)
without disability
n=5
NIDCAP / Control
P-value
14.7 (0.8 – >100)
0.08
Exact logistic regression correcting for gender, gest age, relative birth-weight,
education of parents
Family centered
developmentally supportive
couplet care
at Karolinska
NIDCAP
is the foundation and standard of practice
NIDCAP
Newborn
Individualized
Developmental
Care and
Assessment
Program
Family centered couplet care
Minimize separation
Support the parent’s confidence
Facilitate bonding and attachment
Delivery and maternity at Karolinska-Danderyd
Approx 10,000+ deliveries / year
230 twins, 3 triplets
400 born prematurely – 4.7%
Planned C-sections: 16 beds for 26 csections/week
LOS: two days
week-ends closed
Maternity and prenatal care: 24 beds
Patient Hotel; 24 beds
Uncomplicated delivery admitted after 2-6 hours after
delivery
Midwifes on each shift
Karolinska-Danderyd
Level II +
Infants > 27 gestational weeks
INSURE (Intubation, Surfactant, Extubation),
CPAP, chest tubes, catheters etc
24 beds for infants
8 beds for mothers in need of medical care –
Couplet Care
12-14 infants in the Home Care Program
Karolinska-Danderyd
870 admissions – 8.5%
7.1% in the neonatal unit
1.4% in the maternity wards
jaundice, hypoglycemia, Down’s Syndrome …
54 referred to Level III (6% of admitted, 5.3‰ of all born)
12 for mechanical ventilation (1.3% / 1.2‰ of all born)
6 for cooling (0.7% / 0.6‰ of all born)
Perinatal mortality: 2.2 ‰
stillbirths and deceased during first week
Neonatal mortality: 0.3 ‰ (national 1.6 ‰)
Live-born infants deceased during the first 28 days
33
Opportunities
Minimized separation mother/father – infant
Early skin-to-skin care
Early parental involvement
Early bonding
Parents feel confident caring for their child parents as primary care givers
Parent’s presence enables more prompt responses
/ tuning in on the signals of the infant
Positive effect on breastfeeding
34
Opportunities
Parents feel secure/confident at discharge from
hospital
Early discharge nurse visits in the home / home
care
A stimulating workplace: challenging and inspiring
staff satisfaction staff continuity
35
Challenges
A new way of working!
”Swapped” roles parents as primary care givers
The role of coaching instead of being the ”doer” relationship based care
Being flexible, willing to question routines
Confidence in the monitoring system
More time-consuming care??
Integrity of the family
36
Challenges
Extra need of planning one’s work
Team communication
How sick mothers can we care for?
Neonatal Family Centred Couplet Care
Continuous improvement & research for neonatology
of the future
Changing the future for infants in intensive care
Opening symposium, Karolinska-Danderyd, 18 November 2009
http://web22.abiliteam.com/ability/show/khcichp/abbott_20101118/speed.asp
Opening symposium, Karolinska-Danderyd,
18 November 2009
In English at
http://web22.abiliteam.com/ability/show/khcichp/abbott_20
101118/speed.asp
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